Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto Ruxolitinib. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you. And in doing so I would like to formally acknowledge my gratitude to the Cancer Drug Fund without which my opportunity to take Rux would not be possible at the present time. Let's hope this changes in the near future. Cheers.
WAITING FOR MY 'GOLDEN TICKET'
I reckon I've been a patient patient as the months have trundled me by,
With my frustration mounting at taking HU as my white count rises so high,
Along with the fatigue, the itching, and a spleen so large my belly it sticks right out,
I pressed my viewpoints to my Hem; time for a change without a doubt,
''I'd like to try this 'wonder-drug', surely it must be worth a dib'',
''Oh, you mean the one called Jakafi otherwise known as Ruxolitinib''.
So after a wait of a good six months I finally got my 'Golden Ticket',
Then doubt stealthily ambushed me - If these don't work mate you're on a sticky wicket,
But tis but a fleeting thought as I hand my 'Golden Ticket' over to the chemist lass,
I thought it's odds on they aint got these in stock and for now I'll have to pass,
Hey-Ho a result, ''Do you pay for these'' she asks in an accent clearly scouse,
I'm quick to respond ''you're joking love I'd need to re-mortgage my house''.
Next day I'm up bright and early to open the magic box for my first tab of the batch,
Hmm... looks quite normal content in there but I'm waiting for a catch,
I'm unsure quite what I expected to see, what with their huge cost and all their hype,
So I felt a tad disappointed to reveal what looked to be a common headache pill of a certain type,
And it has no sugar coating so it's a bitter pill to take which has a tendancy to 'stick',
But I swill it down with a mouthful of water and that just about does the trick.
At 3k a box at least they print the AM/PM days on the back of each blister packet,
And here's me with my marker pen out all ready to attack it,
So folks that's 1 down and 55 to go til my next 'Golden Ticket' for Ruxolitinib,
Now I'm hoping it works and doesn't turn out to be a very expensive damp squib.